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Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

Discussion in 'XMRV Testing, Treatment and Transmission' started by CAcfs, Oct 7, 2010.

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  1. Jemal

    Jemal Senior Member

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    Diesel, I can certainly agree on that.

    However, I don't think it will be of much help. The doctors I have spoken to over here didn't even know what XMRV was :-( And I am not sure we should compare XMRV to HIV. I think most doctors won't describe antivirals anyway (it's not even known if they will work).

    I read on the Patient Advocate blog that he has approached a couple of Infectious Disease doctors. They did know about XMRV, but they said the jury is still out on the virus. So essentially they closed the door on him. One even remarked that he thinks in the end the connection (XMRV -> CFS) will not pan out.
  2. Jemal

    Jemal Senior Member

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    I have high hopes for the work of Ila Singh and Ian Lipkin, but we will have to see.
    As you said before, we are moving at lightning speed at the moment, but unfortunately there still seem to be some speed bumps :)
  3. ukxmrv

    ukxmrv Senior Member

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    Sorry to hear about the lack of support where you are Jemal. Would be great if you could just relax and enjoy being 8 months pregnant! just joking as I'm sure your wife can't be very comfortable right now

    What I did was post a question to one of the infertility groups asking if anyone knew a Gynae who specialized in HIV and then went to see her. She had experience of drug treatment in pregnancy and avoiding infection during and also after the birth for HIV and she was happy to discuss what possible implications there could be with XMRV although she didn't know about it specifically.
  4. Jemal

    Jemal Senior Member

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    Actually, my wife is quite comfortable and enjoying her pregnancy. She's totally healthy and that helps a lot of course. We have discussed the possibilities of problems in our children, them having CFS, autism or whatever, but nothing is set in stone at the moment. We just don't have enough information. So for us there's no point in worrying. The only thing I do worry about is if I will have enough energy to continue to work and take care of these children, as they will be little energy drainers :)
  5. Dainty

    Dainty Senior Member

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    I hope you get that too, because here's what CAcfs has said earlier in the thread:

    There you go. She's already made it perfectly clear that those concerns are the reason she's carefully considering the matter and requesting others' input instead of just going on ahead with it. I don't know where you get the idea that she's "purposefully blinding out the fact that XMRV could be a danger to the child's health" when she created this very thread in order to examine that exact concern.
  6. floydguy

    floydguy Senior Member

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    Normally I wouldn't give my opinion on such a topic but since you asked...Personally, I would think twice. I can't support/take care of myself never mind a baby. And I would be totally paranoid about passing along this illness to a child - something I couldn't bear. I think a lot of it depends on the spouse. A superhero spouse could change the equation quite a bit.
  7. urbantravels

    urbantravels disjecta membra

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    If someone is handing out superhero spouses, I would like one please!

    I don't have children, never intended to have any, and that feeling hasn't changed. I do take seriously my own ability to contribute to the life of another - I don't even want a pet - taking care of my own basic needs is enough of a struggle.

    If I really wanted a child, and had a really solid relationship with a partner who is himself very healthy and very willing to contribute far more than his share to caring for a child, I would take the following things into account:

    - It's true that it is always a roll of the dice to have a child, there is never any guarantee that the child will be healthy, and there's no way for a parent to guarantee that the child will live a life free of suffering. However, I would look at how having CFS changes the odds. XMRV is likely transmissable among family members, and it is more likely to be transmitted to a blood relation than to a spouse or partner. A child of mine would have a greater likelihood of sharing whatever genetic vulnerability I have that made me more predisposed to CFS (this would apply whether XMRV is causative or not, since we already have plenty of data about blood relations getting CFS, especially when they live together.)

    - However I feel now may well get substantially worse or substantially better. Again, a roll of the dice. But nobody can tell me which is more likely. I think I understand pretty well that extra efforts, exertions, and stresses are likely to make my condition worse. If I get substantially worse, my ability to care for my child and participate in the child's life will be less than I had hoped, and much more of the burden would fall disproportionately on my spouse or partner. I would be concerned about the effect on him, and also on the effect on our relationship. If I had a superhero husband, or even just a very good one, I would value that relationship very highly and would feel guilty and stressed if I added further to his burdens, above and beyond what he would already have to put up with having a sick wife. (I've already had relationships fail because of the stresses of my illness, and I doubt very much that I will ever be able to have a successful relationship unless/until my condition improves a lot.)

    Of course everything I say should be taken with a grain of salt since I've already stated I am not a person who wants, or has ever wanted, children. But these are the things I would take into account, if I were making the decision.
  8. Navid

    Navid Senior Member

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    even though u don't have the superhero spouse or the child, your theory is in fact correct. a very HUGE issue for me at the start of my illness was the guilt i felt for having let my husband down as his partner in life. At my worst i thought my family would be better off if i were dead, so they could start all over again with a healthy Mom/Wife. This feeling passed and i realized i still provided my family with many many positive things....but it definitely wasn't the way i had thought our life would go.

    whew life with this disease is a tough ....corny as it sounds love has helped me through alot of the tough times.:D:D:thumbsup:
  9. jewel

    jewel Senior Member

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    This is an incredibly difficult, personal decision. I have two kiddos, now teens. I can't imagine my life without them. I am also, though, less severely affected than many. So, if I knew then what I know now, would I have had them? I don't know.... I am waiting to get back results from a study to see if I am + for XMRV. If so, they will get tested. It is always a roll of the dice, and no one can make this decision for someone else. Best to the original poster in what is a most heartrending decision. Love, J.
  10. Tulip

    Tulip Guest

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    I am a mum with me/cfs. I have had me/cfs for 18 yrs and have a 7 year old VERY healthy child. Pregnancy and childbirth did make me sicker as did massive sleep deprivation in the first 2 years. But my child is healthy and full of energy and so well worth going through all of that. I will only have one child though!. As for the whole going on antivirals during pregnancy, I wouldn't, because you have no idea how they can effect an unborn child. What I would do is before trying to get pregnant, is go to a dietician and get a tailored dietary plan for now and when you are pregnant. I would also get advice from your doctor as to which vitamins you should be taking before/during and after pregnancy. Be aware that hospitals do not and will not treat you as "sick" when you are giving birth, so make sure your husband can stay with you in the hospital if possible.

    Personally I do not believe that XMRV is the cause of CFS, it just doesn't add up.

    Good luck
  11. Dainty

    Dainty Senior Member

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    I never said that you said that being a normal parent is selfish. :D (Isn't this fun?)

    We weren't talking about me, we were talking about CAcfs. You've made an inaccurate and hurtful statement about her, and I've addressed your statement in her own words in hopes of setting things straight. Turning your statements on me is not going to accomplish anything; I have already posted my contributing thoughts earlier in this thread and will not defend myself against your assumptions about me.
  12. shannah

    shannah Senior Member

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    Perhaps this information posted in another thread bears some consideration here:

    http://www.forums.aboutmecfs.org/sh...cy-May-Lead-to-Brain-Dysfunction-in-Offspring


    How Immune Response in Pregnancy May Lead to Brain Dysfunction in Offspring
    ScienceDaily (Oct. 12, 2010) — A pregnant woman's immune response to viral infections may induce subtle neurological changes in the unborn child that can lead to an increased risk for neurodevelopmental disorders including schizophrenia and autism. Research published in the online journal mBio provides new insights into how this may happen and suggests potential strategies for reducing this risk.

    "Infection during pregnancy is associated with increased risk of damage to the developing nervous system. Given that many agents have been implicated, we decided to focus on mechanisms by which the maternal immune response, rather than direct infection of the fetus, might contribute to behavioral disturbances in the offspring of mothers who suffer infection during pregnancy," says W. Ian Lipkin of Columbia University, senior author on the study.
    To better understand how the immune response causes these neurological changes, the researchers exposed pregnant mice to a synthetic molecular mimic of a replicating virus. Offspring of the exposed mice had impaired locomotor activity compared to controls. Further testing determined that the exposure inhibited embryonic neuronal stem cell replication, affecting brain development.
    They also looked at the potential role of an immune protein known as Toll-like receptor 3 (TLR3) which is commonly activated in viral infections. Using TLR3-deficient mice they determined that the effects of exposure were dependent on TLR3. They also investigated whether the drug carprofen, a non-steroidal anti-inflammatory drug, would have any effect. Pretreatment with the drug abrogated the effects of exposure.
    "Our findings provide insights into mechanisms by which maternal infection may induce subtle changes in brain and behavior and suggest strategies for reducing the risk of neuropsychiatric diseases following exposures to infectious agents and other triggers of innate immunity during gestation," says Lipkin.
    Editor's Note: This article is not intended to provide medical advice, diagnosis or treatment.

    http://www.sciencedaily.com/releases...1012141924.htm
  13. Fejal

    Fejal *****

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    No don't have a baby. CFS pathogens are transmitted in blood. Blood donation is banned for CFS patients by blood services in the USA and other countries. So your baby will likely get it and also you'll be incapable to take care of it. Don't have one until you are completely well.
  14. Tulip

    Tulip Guest

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    The only problem with that is that there is pretty much overwhelming evidence showing that ME/CFS is a lifelong disease.
  15. CAcfs

    CAcfs Senior Member

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    It has been quite a few months and I've been doing some thinking.

    Here's the thing I've been thinking (and this is really in response to the last two threads too, by chance): The mother doesn't just expose the fetus to pathogens, she passes IgG antibodies on to the baby. For example, with Lyme, the children who are truly sick, from what I gather (and there are exceptions) are the ones whose mothers were bitten WHILE pregnant. Those are the babies that really end up with problems, as a general trend. Of course it can, and has (I think?), been passed to babies when the mother was infected with Lyme a long time before becoming pregnant, but you don't hear of that as much (so it is harder to come to conclusions as to what happened).

    Take toxoplasmosis as another example. Pregnant women need to avoid litter boxes (one of the ways you come in contact with the pathogen), unless they test positive already for past exposure to toxo. Those women are told that it's okay for them to change the kitty litter. So again, the problem is exposure during pregnancy.

    I have been thinking that it just doesn't make sense that all the pathogens a woman is exposed to throughout her lifetime will doom her for a sick baby, and of course evolution has solved that problem through this phenomenon of this immunity being passed on. I realize that some illnesses ARE passed. Like HIV (which is not always passed, but sometimes). However, in response to Fejal's above comment, I really feel that it isn't as simple as saying to me, "What you have will be passed!" Because I have been like this for QUITE awhile (about 10 years). I would think it would be much worse for the baby if I was exposed during pregnancy, and that is something no one can predict or avoid.

    Anyone have thoughts on what I just brought up? Like flaws in that train of thought?

    The other thing is that some will say we have immune dysfunction (and yes, I realize this is proven, but I have never personally had the tests done). I know I don't have IgG deficiency. So far I have no knowledge that I have anything that has been documented (pathogen, immune, or otherwise) to negatively impact a child, and I am not willing to not have children out of fear, without concrete knowledge. That fear is not a good enough reason. And neither are the stories of some woman, somewhere, that had a sick child. That isn't concrete proof of anything since healthy women have sick babies too, so a sick woman having a sick baby will happen from time to time, just statistically.

    Anyways, those are my thoughts on the issue right now. We will likely continue on with our babymaking plans once I feel I am at my absolute healty-est, which will probably be at about 75% of my old self, if I had to predict the future. Right now I am at about 50%. I am not disregarding anyone's opinion, but I am taking what people say as just that, their opinion, based on what knowledge we have.

    I am not meaning to spark controversy by saying this, but since I created this post, I am even less sure of this theory that XMRV is a contributing factor in our symptoms. The jury is still out as far as I'm concerned, and a conclusion either way may never come, on the XMRV issue. It could just be something people end up chasing for awhile, that never pans out for people. Sorry to be so blunt, but I feel that it does have to be said. Everyone exploring XMRV does need to confront the "what if it turns out to be a non-issue?" aspect. If I had a dollar for every abnormality that PWC's have, clinically, vs. the general population......you get the idea. And so far, we still don't know the actual cause, because most of us are not cured. We know everything wrong with us.....but is it the cause?

    I got back on this site to let everyone know that L-tyrosine seems to be helping me A LOT right now. But then this ended up getting bumped based on some chatter in the chat room, so that is why I came here to respond with an update on my thoughts. I am not trying to ruffle feathers. Just trying to get real with my thoughts. Thanks for listening.
  16. Tulip

    Tulip Guest

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    Look, I have had ME quite badly for 19yrs and I have a very healthy 7 year old child, I know of heaps of women with ME that have gone on to have healthy babies that are growing into healthy children. The ones that have the health problems are the mums who are already sick!. For some women with ME/CFS, pregnancy makes them sicker, for others it improves the illness. I'm not going to say that sleep deprivation after they are born is not horrid, because it is (but worth it). Life with a baby requires extra planning with things like cooking heaps of meals before the baby is born, having your mum stay with you, getting your partner to take a few weeks off work and do night shifts etc. But it can be done, if that's what you choose to do.

    I am a single mum, so those saying that if you were sick you couldn't look after your child, really quite clearly have no idea!.

    Good luck with your journey and I agree, don't let fear stop you!.

    Btw this is a forum created by a woman with ME that went on to have healthy kids, it is especially for parents/pregnant women with ME. You will find lots of support there.

    http://www.mecfsparents.org.uk/cgi-bin/yabb2/YaBB.pl
  17. Fejal

    Fejal *****

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    T>The only problem with that is that there is pretty much overwhelming evidence showing that ME/CFS is a lifelong disease.\

    Nobody said life is easy Tulip. I dont like to group everyone together. I think CFS is a mixed pool of post EBV, undiagnosed stealth infections (bartonella, lyme, babesia) aggravated by treatment with exercise therapy and immunosuppressive anti-inflammatories. If so people can be treated and recover, we just need to stop chasing bad treatments and really engage this.

    I decided to just stop anti-inflam (ibuprofen, reduce Tylenol frequency), stop trying to exercise, avoid stress and light pain with sunglasses, take benecar q6h 20 mg 2x + 40mg in eve and rest and my am rising body temp is up from 96.5 to 98 F.

    >So again, the problem is exposure during pregnancy.

    No the problem is immunity. A common finding among infected people is that they have low body temp and poor response to infection. So their white blood cells arent working. If you cant get a fever and run a low body temp then your immunity is inhibited. This is not like aids where T cells are destroyed, they will appear normal on testing but they are inhibited-they dont work because the NF-KB pathway is blocked. So a pathogen like bartonella which you probably wouldnt even know you have has taken advantage of the immunosuppression to start a chronic block from what you cant recover and takes over your blood cells and bone marrow causing bone pain. Lyme, anaplasma and erlichia do the same thing except dont infect bone marrow.
    Another concern is that you need energy to focus on your kids mentally and to take care of them physically. We dont have this in CFS. Therefore you are unfit to be a parent and it would be cruel to have a kid and put them in this situation. Egg cells dont get infected, why dont you freeze some eggs, impregnate them in a lab with your hubbys sperm and freeze the embryos for storage. You can always thaw them out if you ever get better.

    I think you should call James Schaller MD and ask his opinion. He's an expert on stealth infections. http://www.personalconsult.com/
  18. leaves

    leaves Senior Member

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    Uhmm with all due respect, but this is a very personal decision. There are no clear answers. There are risks, but many pwme make excellent parents and love having children. Many children of pwme do very well. Many people without ME are lousy parents, etc
  19. Tulip

    Tulip Guest

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    CFS is a broad diagnosis, however ME is not. It is a clear cut one and is life long.

    Your comments about people with ME/CFS being unfit parents is absolutely disgusting and extremely offensive, you have absolutely NO right making such comments to anyone. Unless you are that person, you wouldn't have a clue :Retro mad:
  20. justy

    justy Senior Member

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    I agree Tuliip, i have 4 children, 2 of which i had when i was mildly affected (with M.E) the other 2 before. My eldest sone has mild dyslexia and dyspraxia -could be a coincidence could be not. My eldest daughter had a cfs type illness for over a year after measles -maybe she inherited a problekm from me i dont know before and after this she was completely healthy. My other 2 kids that i had whilst mild M.E are very very healthy and well. The pregnancies and prolonged breastfeeding improved my illness and whilst the last few years during a severe relpase have been tough for them they have coped very well and so have i. I am perfectly capable of looking after my children and always have been
    Are we suggesting only perfect people have babies. What a ridiculous suggestion to ask a woman to have IVF thats a very difficult procedure to go through for any woman and could pose health issues for her and increased stress.
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